Parents of a sick eight-year-old girl are urgently searching for a cure of her fatal disease.
Keira Esposito had been diagnosed with Sanfilippo syndrome, otherwise known as Childhood Alzheimer’s at only five-and-a-half, devastating her parents.
The disease is categorized as a rare genetic disorder where the body suffers a deficiency of a specific enzyme needed to break down toxic waste. As the waste builds up in the nervous system, it begins to erase everything a child has learned in only a few years.
While the life expectancy is between 10 to 20 years of age, there have been rare cases of individuals surpassing that time frame.
On January 6, Keira celebrated her eighth birthday with a Dora the Explorer-themed party - a bittersweet moment for her parents.
“It was tough. The party was very emotional,” Keira's mother, Elise Esposito told PEOPLE. “Eight is one of the ages in Sanfilippo that is a turning point, and most kids start to decline, so it’s a tough birthday as a Sanfilippo parent.”
Elise and her husband Dave found out about Keira's condition when Elise was nine months pregnant with the couple’s second daughter.
“It was traumatic. They told us our daughter was dying and our unborn child might face the same death sentence. It was awful,” Dave said.
“If we knew she could have a happy and healthy life, we wouldn’t be as panicked about the future, but we’re looking at five to seven years of our child suffering, followed by a vegetative state, followed by death,” Dave added. “That’s our path and there’s no way out. We can’t do anything but fight.”
Thankfully, the family has one last hope.
Elise and Dave are trying to get Keira a placement into one of the few clinical trials that aim to combat Childhood Alzheimer's, but because little is known about the disease, there is very little funding.
“We’re doing what any parent would do with this type of future, we’re fighting as hard as we can because Keira fights so hard,” Elise said.
At Keira's birthday party, her parents took several photos and videos of her and her 2-year-old sister, Keaton, which will one day hold truly significant meaning.
“If there’s no treatment or intervention for Keira, Keaton will never remember a time when they could jump and laugh together," Elise said. "So the pictures and videos like the ones we have from the party where Kiera was laughing and jumping and running are so that we can show Keaton one day.”
Elise and Dave also used their daughter's birthday party as a way to bring awareness to Sanfilippo syndrome. They're collecting donations to fight the fatal disease and have created the crowdfunding website, kturns8.com.
“We are very quickly running out of time. A clinical trial is her only hope, it’s so rapidly progressive and because it is so rare, there is very little government funding for the few clinical trials that do exist,” Elise said.
“I have to remind myself as much as possible to live in the moment because these are good times…and I know what’s coming,” she added.
Our thoughts and prayers are with every child who is suffering from this disease.